A pretty perfect playday with our new friends and a hummingbird.

Ronan. Monday. Presidents Day. Or in other words….. your brothers get to stay home from school day so you’d better act like a normal mama, and make a fun plan for them like you would have back in the day. A fun plan was made for me a few days ago.

Incoming text message from Margarita: Do you want to take the boys roller skating on Monday? On the west side?

Me: Total awesomeness. Roller skating? On the west side? That is so dangerous. Yes, please.

A plan was in place. One less thing I had to think about.

The morning came and I woke up feeling extremely hung over for some reason. It was not due to the imaginary shots/wine/beer I drank. I think I was hung over from the amount of restless sleep that had consumed me once again, during the night. I hopped in the shower, got your brothers up, showered and we were out the door and shoved into this bright, bright world. I took them to Taylor’s for breakfast. “Table for 3?” the waitress cooed. My brain automatically went to, no… table for 4. Where’s Ro? I looked behind me. “Oh, yeah. Table for 3, please.” Fuck. That will never sound right. I sat with your brothers and watched as they inhaled their food. Pancakes, eggs, fruit, 4 sides of bacon, toast. Geez. I cannot keep those brothers of yours, full enough. They eat twice as much as I do. You would have given them a run for the money though. Oh, how you LOVED to eat. You were always my best little eater. We finished our breakfast and drove over to Rita’s house so we could follow her to the roller skating rink. Or as I was soon to discover, my heaven.

Your brothers were excited as they had never been roller skating before. We entered the facility which was packed full of every different kind of person you could imagine. Tiny kids, young kids, tweens, teenagers, adults, grandparents…. you name it. The roller skating rink was dark and disco colored balls lit up the ceilings. I was instantly transferred back to 1989, where problems did not exist. Ummmm…. excuse me. How did I not know that this place existed? A dark place you could go, in the middle of the day, where the best/worst top 40’s music is so loud that you could hardly think straight…. all while on roller-skates! It does not get any better, than that. Your brothers were less than thrilled. I don’t think they will be trading their basketball shoes in, anytime soon for a pair of roller-skates. I got the two of them out on the rink a couple of times, but they were so uncoördinated all they did was skate, fall, skate, fall…. over and over again. They were not the least bit impressed with my mad roller skating, look at me, I can twirl around skills. I held their hands as we tried to skate together. I did not hold back my laughter as they continued to fall. They both reminded me of that scene in the movie, “Bambi,” where he is a baby and he is just learning how to walk. Legs flying everywhere so long that little Bambi just cannot get them to cooperate. They were both good sports and by the end of our hour there, I had Liam skating around the rink hardly falling at all. Quinn was over it pretty fast and could not wait to get out of there. I could have stayed there all day. In fact, the next time I go missing in the middle of the day…. you’ll know where to find me. Great Skate hanging out with my new mid 40’s man friend with the most epic mullet and Van Halen shirt I have ever seen. Next time I go I am totally rocking my Van F-ing Halen tee so we will match. Great Skate rules.

We continued on with our little playdate and Rita and Dragon, came over. It was a spur of the moment, let’s salvage the day and play plan. It was our first play date with them and the boys were excited to have their new little friend over. Their little friend was just wanting to play with some trucks. “I’ve got some trucks,” I said to Rita. “Come over.” So they did. Little Dragon had trucks on the brain so I led him into your room. Rita gave me a look and said, “Are you sure???” I told her I was without a doubt sure. I practically begged her to let her little Dragon, into your room to play with the baskets of toys that are just sitting there. We grabbed about 6 trucks and headed out into your backyard. Rita looked at me again, “You’re really sure.” I gave her my best I’m strong but really sad smile and said I was absolutely sure. That it would make me sad, if your toys were not played with. And play that little Dragon did. Alone for a while, while Liam built pirate ship legos in your room and Quinn tossed the football around with me. I heard Rita yell, “Where in the world did you learn to throw a football like that?!” I yelled back at her, that I wasn’t sure, but apparently it meant I was meant to have all boys. Quinn and I were tossing the ball around for about 15 minutes when it happened. I was feeling good about being a good mom, and playing with Quinn. I never feel that way anymore, mainly due to the fact that I feel like I am freaking crying/hiding all the time. I was standing in our yard and I kid you not, a purple headed humming-bird flew right up to my face and stayed there for a good 30 seconds. I thought it was going to kiss my face. What in the world? Am I dreaming this? I froze. Hummingbirds don’t come this close to people and just stay there, do they? It’s head is purple…. I thought to myself. I must be dreaming. Or dead. Then I heard Quinn, “MOM! The hummingbird! It’s head is purple!” Just as he said those words, it flew off. Whoa. That was weird. I’m not dreaming. Quinn saw it too. I didn’t know what to think or do, so I continued to throw the football back and forth with Quinn. I couldn’t stop thinking about the hummingbird. Was that a sign? A Ro sign? I don’t know but you always hear about how after you lose someone you love, signs appear. Was that it? Or was it just a freaking hummingbird? I told myself not to over think it. Just to go with it. It was a little Ro sign indeed. It’s been a while since I’ve had one of those and it felt nice. Thanks baby.

We played outside for the next couple of hours. I watched Quinn play with little Dragon, just like the way he used to play with you. It hurt/felt good all at the same time. I felt my heart fall in love with this little Dragon that I hardly know, instantly. I watched the way he played in the dirt, destroyed part of Liam’s army Alamo that’s set up by our rocks, played trucks, laughed with Quinn, they took the hose and washed your truck together. Everything that they did were all the things Quinn used to do with you. It was almost too much, but it wasn’t. It’s just the way it’s going to have to be from now on. All that mattered was that two little boys’, had the best play date ever and they were both happy. That in turn, made me feel alright. That little humming-bird appeared again and did the exact same thing to me, just as our day was coming to an end. I think it was your way of telling me good job for being such a good mom for the day. I think it was also your way of telling me that our new friends are extra, extra special. I kind of already knew that though. After our friends left, I fell apart in the garage and let myself cry for everything that used to be, but will never be again. I mainly just fell apart because I miss you so much and I have no control over how much it hurts sometimes. Uncontrollable tears are part of this process. I’m sure they will be, for the rest of my life. I’m o.k. with that. I’m o.k. with the tears. You are worth each one of them.

Today was pretty awesome. Not really, because all I did was get caught up on everyday things that I now hate. And I went to the freaking grocery store, which you know I hate. It’s one of the places, that I miss you most. “Come on Maya! Be a good mom! Get your kids some healthy food and try to cook at least 2 meals this week! You can do it!” That was myself, giving myself a pep talk today as I almost aborted grocery store shopping mission. I pushed my little cart, though out the store and missed you so badly, that I found myself magically transported to the toy aisle where I could not move. Frozen in front of the Star Wars toys on aisle 9. I wonder if Ronan would like this guy…. Oh! A guy he didn’t have! Should I buy it? The conversations in my head go on and on all day long like this. The anger came next. -Maya get out of the fucking toy aisle. Ronan is dead, you do not need to buy him any Star Wars toys today. I went and took my anger out on the Kosher food aisle instead. I’ve never made Potato Latkes before. I’m going to make some fucking Potato Latkes today. I’m going to peel, a fuckton of potatoes and make the best Potato Latkes that have ever existed. I drove home after the grocery store and took the rest of my anger out on cleaning out our refrigerator and getting all the laundry done. I find myself, washing the blankets and sheets in your room, just to do so. Sometimes I secretly think if I wash them enough times, you will come back. Or sometimes I don’t want you to feel left out, so I wash your clothes too. Your little socks are still in my purse. I take them everywhere.

I went on a run tonight to clear my head. I wore my new favorite running shirt which simply says, “Fuck Cancer.” It makes me run faster. I guess I’m still sick because 5 minutes into my run, I started coughing and my chest was burning so badly that it felt like it was on fire. I told myself to suck it up even though all I wanted to do was turn back home and crawl into bed. I didn’t though. I ran so hard/fast for 5 miles that I ended up throwing up on the side of the road. I heard the little voice in my head telling me not to stop, because how was I going to Fuck Cancer if I gave in so easily to the pain of my run, due to being sick. Being sick is for the weak. You were never weak which means I have no right to be either, baby. I sucked it up today for you. I finished my run, came home and took Liam on a date. We went to dinner, where another little thing happened. There was this girl there, playing acoustic guitar and singing. She’s really good, I said to that Liam brother of yours. He agreed. I heard her say, “The next few songs are going to be covers of Taylor Swift.” No freaking way, I thought. Who is this little child prodigy who just made my Ronight? Liam and I listened to her. I held his hand. We both smiled. It was if you were there with us, on our little date. I need this girl, to play at one of our events. She’s awesome. After we paid the bill, I gave Liam some money, a bunch of RoCards, and about 6 bracelets. I told them to put them all in her tip jar. He was so excited to do so. I hope she looks at your little face, looks up this website and something Romazing comes out of this. I think she was worthy of you tonight. Her voice, guitar playing and choice of songs told me this. Liam agreed. After our dinner date, I took your smarty pants brother to the bookstore. My other heaven in life. The book store. I could spend hours in them and so could he. His love for reading has taken off like wildfire! I am so excited about this as I was always such a bookworm. Reading used to be one of my favorite things to do in life. I miss it. Maybe it’s time I start taking it up again. I kind of feel like I could be ready. We shall see. It’s the lack of concentration that seems to be killing me. That and my non-existent memory… the one that I can’t find. Has anybody seen it? I would really like it back…. it’s starting to become a problem. You know it’s a problem when your daddy comes home from work, looks at me and says, “What did you do today?” My reply is always, ” I can’t remember.” And I literally never can. Then I get frustrated, start to cry, and wonder if my brain will ever be the same again. At this point, I’m thinking no.

Much more to write about little monkey man but your brother, Quinny, is looking extra snuggly. I’m going to curl up with him for the night. I’m sorry I can’t curl up to you. It breaks my heart every night. I love you so much. I miss you so much. I hope you are safe. Please, please be safe. Sweet dreams little man. ILOVEYOUILOVEYOUILOVEYOUILOVEYOUILOVEYOUSOOOOOOMUCH.

xoxo

I get by with a little help from my friends

There is no better way to start a Sunday morning than meeting up with my girlfriends at Taylor’s for breakfast. Tricia, Bethany, Fernanda, and Stacy all came prepared with everything we needed to talk about as far as getting things in the works for transplant. These women, I swear could rule the world. Smart, compassionate, funny, beautiful, and savvy are just a few things that come to mind when describing them. Fernanda came armed with a lot of printouts about questions we need to have answered about the isolation period and we put together a pretty good game plan. It was a little overwhelming but I know not to worry too much because these girls have it all under control. There is no way that they will not have everything and more covered. We started lists of everything from who will do laundry to the schedule for Liam and Quinn, to who will sneak me in coffee when I need it. There is nothing these girls will miss and I could not have more peace of mind with whom I am leaving things in charge of. Fernanda has read over 60 blogs of other Neuroblastoma moms and knows everything we need to do and ask.

As we were leaving Taylor’s I was getting into Tricia’s car and she looked over at me and called Fernanda a real life Superwoman. She hit the nail on the head with that one. Fernanda is a even better than Superwoman… she is my version of a Spanish Superwoman with sass, spice, brains, compassion, and just the right amount of  a fiery attitude to help me kick ass through this. Then there is Stacy. The most loyal person I have ever met who loves me like I am family. Who knows just how to calm me down by just giving me a look. If there is ever a time that I feel overwhelmed or panicked, all I have to do is look in Stacy’s eyes and I know everything is going to be alright. She is the type of person who will bend over backwards for you, without ever asking a thing in return. She gives with her entire heart, no questions asked, and fills me with the peace and calmness that I so need in my life right now. And Bethany. You look up the definition of Grace and Beauty in the dictionary, and you will find Bethany’s picture. She is somebody that I have known almost my entire life, just not well at all until now. She is guarded but wears her heart on her sleeve. I am honored that she has slowly let me into her life as it takes a lot to earn Bethany’s trust. She is the most amazing mommy, wife, friend and someone who I would trust with my life and the life of my children 110%. Last but not least, there is my Tricia Boo. My best friend for 6 years now and we have the kind of friendship that dreams are made of. It’s been a six year love story and now she has basically given up everything to help me through this. She is the Godmom to Ronan and my saving grace. There is no way I would be able to get through this without her. Sitting at breakfast this morning I felt so fortunate so be surrounded by these women. One of the biggest gifts I have received on this journey is finding out what people are really made of. The people that are in our lives, right now, at this moment, are pure gold. They are my hidden treasures whose hearts keep me filled with courage and strength. I am beyond blessed.

I think I just wrote a love letter to my sweet girlfriends above… I could seriously write a book on each and every one of them. You know how else I know I am beyond blessed?? Because I just took the time to write about those 4 girls above and I have a handful more amazing girlfriends who I could go on and on about as well. You all know who you are and I love you so much. I will never be able to thank you enough for all you are doing for me, for Ro, for our family. I will simply tell you everyday how much I love you and how thankful I am that people like you exist in the world and I treasure you all so much. Thank you for being the truest friends alive in the purest way possible.

After breakfast, Trish came over and we sat down with Woody to go over everything. We started an online calendar to get the ball rolling on what exactly needs to happen and to figure out which days/nights I will be in the hospital and which days/nights I will be at home. Seeing this on a calendar defiantly makes me feel better. Having something to look at helps to calm my nerves. I feel like we are starting to put a very good plan into place. The thing with cancer is everyday is different and you never know what to expect, but at least this gives me a little something to hold on to. I thrive in structure and with a good plan in place I feel like I will be able to fully focus on Ronan if I know who is doing what on this day and at this time.

Today, the boys’ played with their cousin Luke for most of the day. We also had Luke’s sister Lily over to play as well. She was such a little trooper, keeping up with a house full of 4 crazy boys. I took her up the street for some girly time and we got mani and pedicures. Lily is 8 and is just as sweet as her brother. I never get little girl time, so I was in heaven. She is darling and I loved spending time with her today. We both got glitter nail polish on our toes and Lily got pink on her nails with a little flower design. I would steal those kids every weekend if I could:) It is adorable to see this new relationship flourish between cousins.

After Luke and Lily went home, I could tell Liam wasn’t feeling well today. He took a big nap which he never does and woke up with a sight fever. I sat and held him for a bit but we had to call Mimi and Papa to pick him up so he could go and stay at their house for the night. We can’t take any chances around Ronan if Liam does have something. I hate that I can’t take care of my little guy who isn’t feeling well. I mean, that’s supposed to be my job… I’m his mom. We don’t have a choice though, we cannot have Ronan getting sick with anything before transplant. Off he went and Woody, Ro, Quinn and I walked down to Jay’s house to watch the Superbowl. We had a great time and Jay was the master of the BBQ making the best steaks ever. We hung out, watched football, ate, and played catch outside. Ronan got tired around half-time so I brought him home. Quinn and Ro are fast asleep now and Woody is having some boy time with Jay and Mark. He needs that so much. I am so happy that Woody’s best friend now lives right around the corner from us. It has been nothing but great for all of us.

Alright, xanex is kicking in. I must get a good night sleep tonight…. I have so much going on this week and if I am not sleeping, lord knows what I will forget to do or what I will mess up. I’ve got to try to start sleeping more at night…. otherwise my brain turns into mush and I cannot focus or remember a thing. Hope you all had a great weekend. It was one of the best weekends we have had in a very long time. Goodnight to all of you out there… sweetest dreams possible.

xo

Look at the stars,
Look how they shine for you,
And everything you do,
Yeah, they were all yellow.

I came along,
I wrote a song for you,
And all the things you do,
And it was called “Yellow.”

So then I took my turn,
Oh what a thing to’ve done,
And it was all yellow.

Your skin
Oh yeah, your skin and bones,
Turn into something beautiful,
And you know
You know I love you so,
You know I love you so.

I swam across,
I jumped across for you,
Oh what a thing to do.
Cuz you were all yellow,

I drew a line,
I drew a line for you,
Oh what a thing to do,
And it was all yellow.

Your skin,
Oh yeah your skin and bones,
Turn into something beautiful,
And you know,
For you I’d bleed myself dry,
For you I’d bleed myself dry.

It’s true, look how they shine for you,
Look how they shine for you,
Look how they shine for…
Look how they shine for you,
Look how they shine for you,
Look how they shine…

Look at the stars,
Look how they shine for you,
And all the things that you do.